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This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and changes in professional training have affected research on parenting and/or the experiences of parents who are the subject of such research.

An extensive literature search was conducted, and 78 peer-reviewed, qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals, and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities.

The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

The purpose of this paper is to highlight both the value and critiques of Erving Goffman’s conceptualization of stigma as well as the emotion work needed to learn the lessons it has to teach.

I use a personal narrative grounded in my experience as a member of the “wise” category (the mother of a young woman with cerebral palsy) and observations of the reactions of my disabled students as a vehicle for taking the reader inside the experience of the trials and tribulations of reading Goffman as a member of “marked” social categories and the more humanizing experience of reading Spencer Cahill’s work.

There remains much to be learned from reading Goffman’s Stigma. In many ways his work has set the stage for approaches to the study of disability that we are still discovering. Learning these lessons through is made difficult by the de-humanizing perspective Goffman brings to the work. He clearly locates himself and his readers in the category of “we the normals” who see the stigmatized as “not quite fully human.” For disabled students and scholars and their families, reading Goffman requires a good deal of emotion management. Reading Spencer Cahill’s work can help in that process. Goffman presents disabled students and scholars and their family members with confirmation of what we know to be true about our marked and not quite human status in the eyes of others and in the process gives us our “own.” Cahill helps us all see ourselves in the strangeness that is inside social life. There is great value in both.

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this summary, we explore whether shifts in academic discourse and changes in professional training are reflected in research on parenting and/or the experiences of parents who are the subject of such research. The detailed findings of the original analysis were published in Volume 7 of Research in Social Science and Disability.

An extensive literature search was conducted, and 79 peer-reviewed qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities. The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

In this chapter, we examine narratives of inclusion and exclusion told by professional performers with lifelong impairments who are successfully leading “inclusive” lives in order to bring their voices and experiences to the attention of academics, educators, policy makers, and service providers. We draw on stories told during in-depth interviews with 10 disabled comedians conducted as part of a larger project on the complex seemingly paradoxical relationship between disability and humor. We take an interpretive approach to our data collection and analysis consistent with principles of the emancipatory tradition in disability studies. These performers clearly value the inclusive childhoods their families provided. As children, they were educated in inclusive settings and participated in a wide variety of activities – often centering on the performing arts. Their rich and varied experiences (even the negative ones) have provided both fuel for performance and confidence to push back against attempts by others to exclude them from social and professional life in the everyday world. Their inclusive childhoods, however, are not entirely without a downside. In many cases, they did not develop a sense of disability pride, or even a disability identity, until they had opportunities to interact with others who have impairments during the transition to adulthood. For children raised in more inclusive settings, a conscious effort to provide opportunities to engage with other children and adults with impairments may be an important adjunct to inclusion.

In this chapter, we examine how the schooling experiences of disabled children have changed during COVID-19, how families' engagement, advocacy and support of their children have shifted during the pandemic, and how race, class, and other axes of inequality shape these processes.

We used a semi-structured interview protocol with families of disabled children, asking them about their experiences with their children's schools before and during the pandemic. We analyzed the interview data using “flexible coding” and the constant comparative method.

COVID-19 has had wide-reaching effects on disabled children's schooling experiences, yet these effects varied, particularly at the intersections of disability with race, class, linguistic status, and gender. Remote learning and other pandemic-related changes to schools exacerbated extant inequalities in children's educational experiences, as well as in families' ability to effectively advocate for their children in school.

This research provides important information about how the pandemic has exacerbated inequality at the intersection of disability, race, and other axes of inequality. Moreover, it provides a lens to examine ableism and other systems of oppression in schools. The findings have crucial policy implications, pointing to the necessity of equitably allocated, high quality, inclusive educational services for disabled students, as well as to the need for special education policy that does not rely on individual family advocacy to allocate appropriate services.

The Social Model of Disability, which views social and economic barriers rather than individual bodily differences as the main sources of disadvantage faced by people living with impairments, has gained considerable traction in the literatures of both disability studies and the sociology of disability over the past several decades. Despite this success, however, concern has been expressed that there is a dearth of empirical evidence to back Social Model claims that people with disabilities are not emotionally distressed by their bodily differences or functional limitations, but rather by the layers of social and economic disadvantage imposed on top of their impairments.

Using results of a community survey in a small town in Florida, we examine the degree to which workforce participation and other social and economic disadvantages mediate the relationship between subjective well-being and the presence of functional impairments or self-described disability identity.

We find that study participants who report functional impairments or identify as disabled report lower levels of subjective well-being than participants who do not. Findings also suggest, however, that these differences in subjective well-being can be explained by lack of workforce participation and other aspects of social inclusion and economic disadvantages that are associated with functional impairment and disability identity. Results indicate that work is one, but not the only, important aspect of community participation that mediates between disability experience and well-being. Results also problematize the conflation of functional impairment and disability identity.

Findings point to a need for future qualitative and quantitative research to address differences between functional impairment status and disability identity and to evaluate the relative importance of work and other forms of social inclusion and access to economic recourses to the well-being of people living with impairments and disability.

Findings of this study provide empirical support for, but also add complexity to, the Social Model perspective. They can be used to provide guidance to community leaders in terms of ways in which the lives of residents with disabilities might be improved.